Good morning all
I would just like to ask anyone with GCA that gets pain at the base of the scull, what is this and how is it connected to the GCA, mine always comes on over night and it is a horrible feeling, as a few of you will know I still think mine is connected to my neck but if not what is this scull pain and I usually get a pain in my eye as well, I have been taking my pred about 2.30am when it wakes me
Thank you
GCA can affect the occipital region of the brain - and can cause occipital pain. Interestingly, a 30 year old paper suggests it is associated with GCA showing normal blood markers.
Have you always had it, or it is following your recent issues? You did mentioned something about a special pillow, I think in previous posts so guessing you do have neck problems,
If it’s ‘normal’ for you, then maybe it’s just that, but if it’s new or getting worse then it could be GCA related. Very often it’s difficult to know when you have other health issues, so think you need to decide what it is before we can offer any help.
I vaguely remember having it when first diagnosed, my symptoms were claw feeling on top of head, back of scull pain and then slight burning in right temple, I hadn’t felt well for a good few mi ths and nhs GP dismissed it as stress, I paid to see a private GP had blood tests and MRI, MRI all ok but bloods slightly elevated and mum had GCA and PMR so she wanted to put me on steroids, I was very reluctant due to seeing how it all affected my mum so I saw a private Rheumy that evening, a real bully, no bedside manor and very brutal on how she spoke to me, said the pain at back of head was neck problems, scalp stress and temple GCA, steroids or go blind, put me on 30mg pred and urgent scan, she messed the referral up and scan wasn’t done for 10days by which time obs due to steroids was clear, I saw her every two weeks at £250 a time reducing pred, she always said any returning symptoms to up the steroid immediately, always hard to get hold of her and her secretary was useless, I parted company with her after 6 months, I know have this huge ? over is it or isn’t it GCA, this neck problem just at night and pain in my eye but goes when I get up, so is it the way I’m sleeping, it’s very much the right side of scull top of cervical spine, I’ve just looked at the link and symptoms of occipital nerve is so similar even to eye pain, so I am now in this hamster wheel of what is it, with no other tests to be done but back on high dose of steroid, I even thought should I sit up all night and see if it happens, if not it could be the way I’m sleeping if it happens sitting up then could be when the inflammation has risen, I’m home tomorrow so back to my pillow and neck collar, plus osteopath and Rod Hughes on the 7th, thank you for reading, I just wasn’t sure what the connection was with the back of scull pain
This link discusses subject and also biopsy of occipital artery [not that I’m suggesting that for you] I hasten to add-
Since the rude rheumy could no more tell if if wasn't GCA than any of us, she was wrong. Finding two out of 3 symptoms were likely GCA, there was no way she could be so confident the occipital pain wasn't as well.
I'm sure you'll discuss it all with Rod Hughes on 7th.
Just to say recently I was a volunteer 'subject' on a training day for Ultrasound for GCA - the delegates were doctors and sonographers. They practised scanning 5 of my arteries, one of which was the occipital artery! (Others temporal, facial, maxillary and carotid in my neck.)
Best wishes and I hope you're able to determine what is causing the pain and get it treated asap.
Thank you all, it’s such a difficult illness, if you know something 100% you do whatever needs to get better, but I’m not convinced and the steroids have given me so many side effects and now nearly 2 years later still on fairly high dose of steroids, this site is so helpful, it makes such a difference
Hi I have had gca for 4 years but have just stated with the same pain for about a week now comes on over night but gets a little easier through the day ,so will be interested to see what you find out my blood markers are all fine.
What dose are you on? Have you recently reduced dose, and your pain has come on since then? If so then it could be a flare -and as we know blood markers very often have a habit of lagging behind symptoms-so please don’t assume ‘they are all fine’
on 6.5mg reduced down from 10mg at 0.5mg per 4-6 weeks pain has started about a week after being on 6.5 for a day or so. Rhumy phoned me today resending for more blood tests
In that case it does sound suspiciously like a flare - see this for explanation- so just monitor it, and don’t let it get any worse. If it does you might need to follow advice -
hi, although it is fifteen years ago I certainly remember having to get up early in the morning to help ease head pain which was all over and heavy. No jaw pain or eye problems but a pet scan 8 months later even after being on steroids showed massive inflammation. Mentally and physically I was so ill and because put on too lower steroids and mycophenolate it took me a long time to improve.
Hope your new Doctor helps you. J
I don’t have an answer for you but skull pain at night was how my GCA started. Then the pain moved to my temples and jaws. This all happened over 2 weeks before I saw my GP and my treatment started. Why do you take the Pred at night? I was told to take it every morning after food along with Omeprazole, which I did and that worked well for me.
The 2-3am dosing time has been identified in clinical studies as the ideal time to take pred to minimise morning symptoms of PMR and GCA. The inflammatory substances that cause them are released in the body at 4-4.30am, taking the pred before that means it is present at its peak just as the inflammation starts to be created and so it is immediately dealt with and doesn't get a hold.
That’s interesting. Thank you. My rheumatologist obviously didn’t know that. However, my routine worked well for me. I’m now down to 2mg and tapering.
If your pred lasts a full 24 hours or more - it can be from 12 to 36 hours - then you wouldn't need to consider it. If it is much less then you might split the dose to cover the full 24 hours - again, it saves the nighttime dose. The study was originally done for RA but they note it applies to PMR too. And of course it gave rise to a formulation of pred that can be taken before bed - it is brilliant, I get it here in Italy, but the price in the USA is unbelievable!
I never had it do that with my GCA either … obviously I fell into the group where Pred lasted full 24 hours -sounds as if you are the same. Be grateful 😊
Hi, I was diagnosed with GCA and I only had a back of skull headache and jaw claudication. Blood results were high too.
I thought it was odd that they did an arterial biopsy at the temple not the occipital region. Rheumy would not answer when I asked. Probably needless to say, it was negative.
I have cervical stenosis and severe disc issues which cause headaches at the back of my head, could this not be a possibility?
Take care
Wendy xx
Morning.Regarding skull neck pain etc may well be muscoskeletal..I got in a panic a while back as thought GCA was rearing it’s ugly head again.Pain in right side of head,neck,eye,tingling scalp.Rheumy ordered ESR CRP 7 and 2 respectively .Also feel dizzy on bending over.Sitting aggravates I it and can only lay down with my butterfly pillow.Am going to have a scan to see if something is pressing on a nerve as I have shoulder issues as well as neck.Years of physical work I guess.But please do what you think is appropriate,don’t dismiss anything if you are not happy.Too much to lose and about time a lot of Drs stopped dismissing all these aches and pains as age related!xx🌼😜
How is your sternocleidomastoid muscle? Down the side of your neck and can cause all that.
Have not got a clue?Not even sure what it is!Got a neck injury years ago using tree loppers ,never been right since.Years on and off of seeing osteopath,he just said OA.Got worse since I have got bone spur on right shoulder.SO uncomfortable,feels like my head weighs a ton! Cos the symptoms mimic what I had with GCA ,get a bit panicky.Got to see Dr for an M.O.T so am going to ask him to refer me for a private scan,might as well spend my little bit of money before government take anymore of it! Torrential rain here this morning,mind you the ducks are loving it!xx😜🌼
youtube.com/watch?v=_BGczs_...
SnazzyD has a good video too - which I have a total blank about and can can never remember which it is!!
WOW!Thanks for that PMR pro!Shall certainly be trying the exercises.Got 10 days before I see Dr,so if that is my problem it might save me heaps of money!Youre a star!Jack of all trades and Master of many you are!xx❤️🌼🌼😜🤞🏼
This might be one of the videos mentioned by PMRPro. I had many a GCA scare due to SCM muscle tightness. It is worth keeping in a good state to avoid confusion.
There are actually other muscles in the neck that can also cause a lot of seemingly unrelated trouble. The person the video does one about cervicogenic dizziness that covers them. If you decide to try the exercises, go really easy unlike I did! I had a crack at some new ones a couple of months ago and didn’t feel good the next few days.
youtu.be/_BGczs_axTg?featur...
Thank you, my neck muscles are really tight, I had steroids injections about 6 weeks ago C3-C6 but it’s higher up that the problem lots of cracks and locking, I’m on a mission now to try and get this sorted, I think we are all so scared of the GCA and the blindness situation that we immediately up the steroids, I remember you saying about the SCM muscles before, I did mention it to Rod Hughes at my last visit, will bring it up again next week, thank you x
Thanks SO much for your reply,yeh,this is the video PMRpro sent me.Tried it a couple of times so far but made the other side of my neck hurt now!😱Feel dizzy with it but bp is fine 101/68 so guess it is neck causing the problems.Really getting on my nerves now,that and the fatigue that is getting worse.After about 11 am I am buxxxxxx!Probably tapering down to end of DLs taper to 5 and 1/2 mg.Felt ok this morning mentally but feel down now,really gets you down don’t it eh?Just got to suck it up and get on with it like so many others..Thanks again.xxx😪😜🌼
If you are tapering at that level - of course the fatigue is getting worse. Don;t fight it too hard - let your body catch up.
Thanks PMRpro,nice to be reassured that the fatigue is just the tapering.Due to start 5mg on Sunday,using DLs five week plan……dreading it!Will fatigue get worse?Would give my eye teeth to be back on a high dose,just to feel normal again( not that I was EVER normal!Wonder if DL ever had the chronic fatigue when she was tapering or was she lucky not to have it?I believe she only had GCA( shouldn’t say ONLY!!,god it was hellish.Just got to accept it for what it is,people with terminal cancer,MND and the likes and poor Grammy now having Parkinson’s.😪Should count my blessings and stop being a wuss!xxx🌼🌼😜
I'd give it a couple of weeks to let your body catch up before starting the next taper step. The fatigue comes from reducing the pred and is probably worse after GCA doses, you are on high dose pred for much longer,
Thankyou SO much,I feel as if I have been given a present by you saying stay on 5 and 1/2., never thought I would be so grateful to stay on pred !So do you think I should do a 7 week taper when I do start again?Sorry to keep bothering you?xx🌼🌼
I agree with DL
Thanks PMRpro,light at the end of a horrible dark tunnel I hope.Am not going to tell Rheumy,not speaking to him for 5 months anyway so as Frank Sinatra said “I did it my way!”xx🌼😜💐
Not to the extant that many had… it was very random and only last for a few hours [not days on end like some] but it seem to go on over a long period. About 8 months or so…between the doses of 6mg down to 3mg [very slow tapers] and then fine.
And yes, a 7 week taper would probably be a good idea.
..
Cheers DL,not felt right since I was on between 8 and 7 mg.The 6 downwards has been hellish.Thanks so much for your advice,will stay on 5 and 1/2 for another 2 weeks then shall I ,then start a 7 week taper ?Wish I could go up a bit but guess just got to accept the fatigue.Will have to look up the 7 week taper ,where would I find it?xxx🌼🌼🌼
Along with my others here -
healthunlocked.com/pmrgcauk...
.. and yes, you have to try and ride it out, unless it gets really unbearable. It will get better, and if you go up now, you will have to come down, and probably go through it all again. Sorry!. 😏
Thankyou so very much DL,will print off the 7 week taper.Dont be sorry!Just got to go with it,but just realised it is coming up to nearly 3 years since it all started.,Doesn’t time fly when you are NOT having fun? Many thanks again,what would we do without you eh?xx💐💐💐💐
Don’t forget that with low doses the adrenal glands need to start working. If they don’t, which is common, you can feel dreadfully tired. If that is the case “getting on with it” is not a good idea,
Hi Snazzy D,thanks for your reply.Starting to feel like a couch potato and that ain’t me!Does that sound like a good plan that I am going to start with DLs advice?As she said,even though I would like to go up a bit ,not a good idea as I would only have to start all over again.Guess in the grand scheme of things I have only been on pred for 22 months since diagnosis .,including the yo yo ing!xx🌼😜
Yes, it’s a case of small drops and slow. In order not to have to go back up. For my low adrenal function I did 0.5mg over anything up to 14 weeks depending on how limp I was. Generally it was a case of the lower I got the slower I went. If your fatigue is due to low cortisol pushing yourself physically or mentally will not end well generally.
Thanks SO much Snazzy,just seems to be dragging on,Try not to do too much but having OH with mixed dementia and animals ,even though they are all a blessing,there are things that I have to do.Over last couple of weeks have made myself realise that I cannot be the super fit hero I always was.Inna way I am GLAD weather is not fit for gardening ,at least I can stop feeling guilty !Neck today the same,did the exercises plus ones I have always done,took 2 paracetamol and some gel rubbed on it.Will have to try and get in the habit of not tending neck muscles!Many thanks again for your valuable input.Will do the 7 week taper and if not feeling right will go even slower.xxx💐💐😜
I have a friend who has what she calls The Mini-Gardeners. A local family does home schooling and they come to her once a week as part of their home schooling to learn about gardening. They do the grunt work and learn and she supervises. Might be worth an ad in the local shop or on a community billboard on FB - often someone who can and wants to garden but doesn't know how or has no space of their own.
Thanks for that PMRpro,we have a gardener who does a couple of hours a week,OH still likes to use the ride on for the vast lawn,and the gardener goes around with petrol mower around beds,trees etc that the ride on cannot reach.I tend beds,edge them and weed.Find it quite therapeutic,But as I say,neither the inclination or strength at present to do that!Luckily enough ,HOPEFULLY the season will be nearing the end so I can just chill.Will have to repot all my fuschias and tie back climbers but that can be a little job if I feel like it.I am now thinking if I lose anything in garden,it is not the end of the world,my health has to come first.As for gardeners or anybody to come in,all the villages around here are mainly elderly people so every available gardener is fully booked.Not any children around here of the age ( or inclination) to want to do this type of thing.I had a young lad come in as a novice ,tried patiently to teach him basics,but he was so slow in learning and we could not warrant paying him double what he asked for(felt sorry for him) Hopefully come next spring I shall feel heaps better and start to be able to do more.ME on Facebook!😱Wouldnt know where to start! Xxx😜🌼🤣🤣🤣👍
This all sounds very similar to me, I’m going to really try and get to the bottom of it all, thank you
Good luck to us both eh?xx🌼😜
It’s a long ride isn’t it, at least we can all be here for each other xx
Just as well as I am on a real downer at present.Just popped 2 paracetamol,even too tired to have a bath!😱 😒xx🌼😜
I have been diagnosed with PMR for about 7 weeks now and have been getting terrible headaches in the back of my head near to my neck. I have not suffered unduly with headaches ever before in my life. My GP, having checked for GCA said he thinks its tension from neck region because of the muscle pains in my shoulders. If you have been getting pains in your eyes as well perhaps you should get another check urgently x
Your GP may be correct… but how exactly has he checked for GCA?
Just kept asking if I had any vision problems , or pains in my temples or jaws and pain chewing. He also stressed how important it was to go to A&E straight away if I did. But the headache is always at the back of my head.
Okay…so what, if anything, has he,suggested to help. Do painkillers help headache, or muscle relaxants, topical gel, even therapy for shoulders.
Sorry to keep asking questions, but if you know my story you’ll understand why.
He increased steroids back to 15 from 12.5, suggested paracetamol , and has contacted rheumatologist at local hospital for advice. But that was a week ago and we haven't yet had a reply.
The headaches come very suddenly and are very bad - but then go just as suddenly. My walking is also now very bad. Wobbly and achy weak legs but I do have peripheral neuropathy as well and I need a stick to walk and now have a blue badge. I have asked if physiotherapy would help.
It takes so long to get any answers
He's checking on the red flags - but sometimes they are more sort of pink and the red ones don't always hang out!!! They think there is a fixed pattern but it isn't always that simple.
Thank you - but what tests are available to be sure it isnt GCA ??
There aren't. Which is why he is being a bit cavalier in our opinion. You can get a test that if positive is certainty - but negative just means something wasn't found, not that it isn't GCA, It is a primary unmet need - probably the greatest and most problematic.
So is the only way forward to wait and see if it gets worse? - and hope it doesn't😏
Probably! So helpful amn't I? But unfortunately, until you have fairly clear symptoms a lot of doctors just aren't interested.
It is very helpful to have someone to talk to who has experience.
The GP is very conscientious, I believe, and has asked for advice from the Rheumatologist but not getting response - and probably as much in the dark as we are. I am struggling with the side effects of steroids at the moment and don't think he would increase to a much higher dose without clear reason
Sorry to hear of your problems.Such a minefield isn’t it eh?Paranoia reigns!Hope you are getting expert help,just cannot be too lax as far as GCA is concerned as well as I and DL know.Regarding back of neck,maybe ,just maybe it could be tension,we ALL have plenty of that don’t we eh?I made a concentrated effort this morning not to grit my teeth whilst working!Could NOT believe how many times I caught myself doing it.Am now la la la la ing like an opera singer doing her scales to keep my damn jaws apart.,🤣🤣🤣🤣 Just glad that nobody can see or hear me( OH is nearly deaf!) ,or would probably be carted off by the men in white coats!🤣😱😲😲Hope all goes well for you.xx😜🌼
Thank you for your kindness. Yes, if you ache it is difficult not to get tense isnt it.
I am a professional artist and can 'lose myself' when painting. Good job I dont have to sing to relax - would frighten all the neighbours 🤣🤣🤣
Wow,how lucky to have a talent like that!Stick men are my limit.Though I used to make and decorate celebration cakes so we all have something that we are good at eh?Do hope you get your problems sorted,pain is an awful thing to deal with constantly,even if it is low grade.My kids laugh at me when I say to them that god is paying me back for all my nastiness!Happy painting,hey,just had a thought,maybe you could do a picture to be raffled off for our charity? I am thinking of making up a hamper for Xmas and seeing if I can put it in one of our shops or pubs.Dont feel pressured though eh? Xxx🌼😜
Happy to donate a painting 😀 How do I let you have it to raffle though? I'm not any good at organising raffles - but you are very welcome to have a pic.
WOW how generous of you!Hoping DL or PMRpro are reading this and they might have an idea of how we can sort it!Guess it would be Fran who would be the best person to guide us.Hope I have not stirred up a minefield here,just trying to see if we can help in our own ways.Bless your heart.,❤️🌼😜
Ask Fran - nothing to do with us!!!!!
Cheers PMRpro,just a nod in the right direction.Maybe to have a professional painting she might know if any of the donors might have Xmas parties that might entertain putting it in a raffle or something.Only a thought?xx🌼
Agree with PMRpro - need to speak to charity bods...
Thanks DL,just e mailed Fran to see if she has any ideas.Was thinking donors Xmas parties raffles etc.x🌼👍
As PMRpro has said, above our pay grade! We aren't employed by Charity, just patients [or in my case ex patient].
You two are always very "patient"!!
Thanks DL,forum went down here for a while so not sure if my message to you went.Quite understand that you and PMRpro are not attached to the charity side,just needed bit of advice about it really.Just want to try and do my bit to help for all the advice and help even if you and others are unsung heroes!( creep ain’t I?)x🌼😜
Yes it it did - go down that is... got message ta..
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